Medical Ethics

BackgroundIn August 2017, Chile lifted its complete ban on abortion by permitting abortion in three limited circumstances: 1) to save a woman’s life, 2) lethal fetal anomaly, and 3) rape. The new law allows regulated use of conscientious objection in abortion care, including allowing institutions to register as objectors. This study assesses medical and midwifery students’ support for CO, following legal reform.MethodsFrom October 2017 to May 2018, we surveyed medical and midwifery students from seven universities located in Santiago, Chile. Universities (...) included 4 secular and 3 private religiously-affiliated universities; all offering medical degrees with a specialization in obstetrics and gynecology and five offering midwifery degrees. We used generalized estimating equations to identify characteristics associated with student support for CO, intentions to use CO to refuse to care for someone seeking abortion, and support for CO at the institutional level.Results333 of the 413 eligible students who opened the survey, completed the questions on conscientious objection; 26% were seeking medical degrees with an ob-gyn specialty, 25% were seeking midwifery degrees, and 49% were seeking medical degrees and had not yet decided their specialty. While nearly all endorse requirements for conscientious objecting clinicians to inform and refer abortion-seeking patients, a minority would personally use conscientious objection to avoid caring for a patient seeking abortion. About half of religious-university students and one-fifth of secular-university students support objections at the institutional level.ConclusionsMost students support the regulated use of CO which preserves patients’ access to abortion care. Religious-university student views on the use of conscientious objection in abortion care are discordant with those of their institutions which currently support institutional-level objections. (shrink)

BackgroundDespite the implementation of codes and declarations of medical research ethics, unethical behavior is still reported among researchers. Most of the medical faculties have included topics related to medical research ethics and developed ethical committees; yet, in some cases, unethical behaviors are still observed, and many obstacles are still conferring to applying these guidelines.MethodsThis cross-sectional questionnaire-based study was conducted by interviewing randomly selected 331 Lebanese physicians across Lebanon, to assess their awareness, knowledge and attitudes on practice regarding international and national (...) research ethics guidelines and scientific misconduct and misbehaviors.ResultsOur results revealed that although majority of participants declared familiar with ethical principles governing research that involves human subjects, the overall mean score achieved on their knowledge questions was 46%. Only 27.4% are aware of the presence of the Lebanese National Consultative Committee on Ethics, with only half of them aware of its functions and only 25.7% know about the charter of ethics and guiding principles of scientific research in Lebanon. Significant higher levels of research ethics knowledge were recorded among Ph.D. degree-holding subjects, higher university positions as in professors, research ethics trainings-attendees, and physicians with prior research experience. A significant correlation was observed between knowledge of research ethics principles and positive attitudes toward research ethics principles. Noteworthy, we found that more than one third of participants have reported witnessing scientific misconduct and misbehaviors at some period of their careers.ConclusionsThe presence of low mean awareness levels regarding research ethical principles among the study population of physicians and high levels of perception of scientific misconduct raises concern on the importance of implementing proper training for physicians on research ethics. (shrink)

BackgroundEuthanasia can be thought of as being either active or passive; but the precise definition of “passive euthanasia” is not always clear. Though all passive euthanasia involves the withholding of life-sustaining treatment, there would appear to be some disagreement about whether all such withholding should be seen as passive euthanasia.Main textAt the core of the disagreement is the question of the importance of an intention to bring about death: must one intend to bring about the death of the patient in (...) order for withholding treatment to count as passive euthanasia, as some sources would indicate, or does withholding in which death is merely foreseen belong to that category? We may expect that this unclarity would be important in medical practice, in law, and in policy. The idea that withholding life-sustaining treatment is passive euthanasia is traced to James Rachels’s arguments, which lend themselves to the claim that passive euthanasia does not require intention to end life. Yet the argument here is that Rachels’s arguments are flawed, and we have good reasons to think that intention is important in understanding the moral nature of actions. As such, we should reject any understanding of passive euthanasia that does not pay attention to intent.Short conclusionJames Rachels’s work on active and passive euthanasia has been immensely influential; but this is an influence that we ought to resist. (shrink)

BackgroundPeople who are at elevated risk of suicide stand to benefit from internet-based interventions; however, research in this area is likely impacted by a range of ethical and practical challenges. The aim of this study was to examine the ethical issues and practical barriers associated with clinical studies of internet-based interventions for suicide prevention.MethodThis was a mixed-methods study involving two phases. First, a systematic search was conducted to identify studies evaluating internet-based interventions for people at risk of suicide, and information (...) pertaining to safety protocols and exclusion criteria was extracted. Second, investigators on the included studies were invited to complete an online survey comprising open-ended and forced-choice responses. Quantitative and qualitative methods were used to analyse the data.ResultsThe literature search identified 18 eligible studies, of which three excluded participants based on severity of suicide risk. Half of the 15 suicide researchers who participated in the survey had experienced problems obtaining ethics approval, and none had encountered adverse events attributed to their intervention. Survey respondents noted the difficulty of managing risk in online environments and the limitations associated with implementing safety protocols, although some also reported increased confidence resulting from the ethical review process. Respondents recommended researchers pursue a collaborative relationship with their research ethics committees.ConclusionThere is a balance to be achieved between the need to minimise the risk of adverse events whilst also ensuring interventions are being validated on populations who may be most likely to use and benefit from them. Further research is required to obtain the views of research ethics committees and research participants on these issues. Dialogue between researchers and ethics committees is necessary to address the need to ensure safety while also advancing the timely development of effective interventions in this critical area. (shrink)

BackgroundIn June 2019, the Australian state of Victoria joined the growing number of jurisdictions around the world to have legalised some form of voluntary assisted dying. A discourse of safety was prominent during the implementation of the Victorian legislation.Main textIn this paper, we analyse the ethical relationship between legislative “safeguards” and equal access. Drawing primarily on Ruger’s model of equal access to health care services, we analyse the Victorian approach to voluntary assisted dying in terms of four dimensions: horizontal equity, (...) patient agency, high quality care, and supportive social norms. We argue that some provisions framed as safeguards in the legislation create significant barriers to equal access for eligible patients.ConclusionsWhile safety is undoubtedly ethically important, we caution against an overemphasis on safeguarding in voluntary assisted dying legislation given the implications for equal access. (shrink)

BackgroundThe European Union aims to optimize patient protection and efficiency of health-care research by harmonizing procedures across Member States. Nonetheless, further improvements are required to increase multicenter research efficiency. We investigated IRB procedures in a large prospective European multicenter study on traumatic brain injury, aiming to inform and stimulate initiatives to improve efficiency.MethodsWe reviewed relevant documents regarding IRB submission and IRB approval from European neurotrauma centers participating in the Collaborative European NeuroTrauma Effectiveness Research in Traumatic Brain Injury. Documents included detailed (...) information on IRB procedures and the duration from IRB submission until approval. They were translated and analyzed to determine the level of harmonization of IRB procedures within Europe.ResultsFrom 18 countries, 66 centers provided the requested documents. The primary IRB review was conducted centrally or locally and primary IRB approval was obtained after one, two or three review rounds with a median duration of respectively 50 and 98 days until primary IRB approval. Additional IRB approval was required in 55% of countries and could increase duration to 535 days. Total duration from submission until required IRB approval was obtained was 114 days and appeared to be shorter after submission to local IRBs compared to central IRBs.ConclusionWe found variation in IRB procedures between and within European countries. There were differences in submission and approval requirements, number of review rounds and total duration. Research collaborations could benefit from the implementation of more uniform legislation and regulation while acknowledging local cultural habits and moral values between countries. (shrink)

BackgroundWith the huge number of patients who suffer from chronic and incurable diseases, medical scientists continue to search for new curative methods for patients in dire need of treatment. Interest in stem cells is growing, generating high expectations in terms of the possible benefits that could be derived from stem cell research and therapy. However, regardless of the hope of stem cells changing and improving lives, there are many ethical, religious, and political challenges and controversies that affect the research, and (...) mandated to establish ethical guidelines and regulations. In Saudi Arabia, key stakeholders play an active role in discussing the ethics of stem cell research and therapy. The focus of the study was to explore professionals’ perceptions related to the ethical challenges of using stem cells in research and treatment in Saudi Arabia.ResultsA qualitative research study was conducted to explore and describe the perceptions of 25 professionals employed at different tertiary hospitals in the various regions of Saudi. A thematic analysis was performed to search for and identify the most significant perceptions shared by the participants. Four themes were generated based on the ethical challenges of four areas related to stem cell use, including forbidden and permitted sources of stem cells, informed consent, beneficence, and ethical regulations and guidelines.ConclusionThe study identified that there is a growing need to advance the knowledge, education, and awareness related to stem cell research and treatment in Saudi Arabia. (shrink)

BackgroundPartnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting (...) on and dealing with these issues.MethodsWe conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed.ResultsWe have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18 second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics.ConclusionsWe have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics. (shrink)

Freebirthing is a clandestine practice whereby women intentionally give birth without healthcare professionals present in countries where there are medical facilities available to assist them. Women who make this decision are frequently subjected to stigma and condemnation, yet research on the phenomenon suggests that women’s motivations are often complex. The aim of this review was to explore how freebirth has been conceptualised over time in the English-language academic and grey literature. The meta-narrative methodology employed enables a phenomenon to be understood (...) within and between differing research traditions, as well as against its social and historical context. Our research uncovered nine research traditions originating from eight countries and spanning the years 1957–2018. Most of the texts were written by women, with the majority being non-empirical. Empirical studies on freebirth were usually qualitative, although there were a small number of quantitative medical and midwifery studies; these texts often focused on women’s motivations and highlighted a range of reasons as to why a woman would decide to give birth without HCPs present. Motivations frequently related to women’s previous negative maternity experiences and the type of maternity care available, for example medicalised and hospital-based. The use of the meta-narrative methodology allowed the origins of freebirth in 1950s America to be traced to present-day empirical studies of the phenomenon. This highlighted how the subject and the publication of literature relating to freebirth are embedded within their social and historical contexts. From its very inception, freebirth aligns with the medicalisation of childbirth, the position of women in society, the provision of maternity care and the way in which women experience maternity services. (shrink)

This study contributes to our understanding of the ‘medical gaze’ and its impact on the ways in which people living with dementia experience care during a hospital admission. Visual perception has a powerful effect on our emotional and moral reactions to others. One aspect of how we perceive and respond to others is through clothing, which relates strongly to class and social position. Our focus is on exploring the ways in which patient clothing may affect the perceptions and response of (...) others, and self-perception and resulting behaviour. We draw on ethnographic research within acute hospital wards in five hospitals across England and Wales, examining the everyday organisation and delivery of care to people living with dementia. People living with dementia are a significant population who have poor experiences and outcomes of care within the acute setting. Our data suggest that the twin aspects of clothing and appearance—of self-perception, and of perception by others—may be especially important in the fast-paced context of an acute ward environment, where patients living with dementia may be struggling with the impacts of an additional acute medical condition within in a highly timetabled, regimented, and unfamiliar environment of the ward, and where staff perceptions of them may feed into clinical assessments of their condition and subsequent treatment and discharge pathways. (shrink)

This study involved a thematic analysis of montage paintings and of related clinical records of 240 active-duty military service members collected during their art therapy treatment for traumatic brain injury and underlying psychological health concerns, including post-traumatic stress, at the National Intrepid Center of Excellence, Walter Reed National Military Medical Center, Bethesda, Maryland, USA. Congruent with other research findings, the qualitative analyses of this study suggest that the group art therapy experiences fostered improvement in interpersonal relatedness, hopefulness and gratification for (...) the service members in treatment, aiding in externalisation, progressive exposure and construction of a trauma narrative imperative for recovery. The mixed media nature of the montage painting supported the expression of a range of postcombat symptoms. Results from this study highlighted the complexity of military culture, necessitating a broader scope of analyses for how art therapy helps service members express and communicate their challenges to care providers, peers and family as well as regulate emotion in the short and long term. (shrink)

This article concerns deaf children and young people living in South Africa who are South African Sign Language users and who participated in an interdisciplinary research project using the medium of teaching film and photography with the goal of enhancing resilience. Specifically, this paper explores three questions that emerged from the deaf young people’s experience and involvement with the project: What is disclosed about deaf young people’s worldmaking through the filmic and photographic modality? What specific impacts do deaf young people’s (...) ontologically visual habitations of the world have on the production of their film/photographic works? How does deaf young people’s visual, embodied praxis through film and photography enable resilience? The presentation of findings and related theoretical discussion is organised around three key themes: ‘writing’ into reality through photographic practice, filmmaking as embodied emotional praxis and enhancing resilience through visual methodologies. The discussion is interspersed with examples of the young people’s own work. (shrink)

Tinnitus has long been interrogated as a medical conundrum, with little discourse between medicine and other disciplines. It involves the perception of sound in the ears or head without any external sound source, most likely a natural consequence of some form of hearing loss. For many people, tinnitus is bothersome and associated with various problems such as insomnia, difficulty concentrating and impaired listening ability. Nevertheless, with little attention from humanities or the social sciences, our understanding of the wider perspectives and (...) psychosocial context of adults with tinnitus is limited, especially among UK military veterans. The aim of this study was to explore the impact of tinnitus on aged UK veterans, and to consider the support they receive and require to live well with tinnitus. In all, 120 aged UK veterans took part in this study. Data revealed similarities and differences between UK veteran and other study populations. For example, tinnitus symptom severity was higher in aged veterans than a general research population, particularly so on measures of intrusiveness and the effect of tinnitus on listening ability. Veterans had mixed views on social support. Many did not want to talk about tinnitus with others and/or did not want to burden their family, preferring to deal with their tinnitus ‘backstage’. Others appreciated empathy or sympathy; many implied a desire that their family and/or friends could better understand their experience of living with tinnitus and the problems it caused them. These complexities support a need for cross-disciplinary work to understand and respond to tinnitus-related problems in veterans. (shrink)

In the first three decades after AIDS started infecting people in the USA and Canada, before, during and after the emergence of anti-retroviral therapies, numerous “alternative and holistic treatments” for AIDS were debated, tested, circulated, written about and taught. This paper, taking a narrow focus, examines documents that reveal how some people with AIDS developed a logic of care predicated on intimate interactions with microscopic lifeforms—the AIDS virus and the bacteria involved in fermentation, in particular. Focusing on the writings of (...) Jon Greenberg and Sandor Katz, two former members of ACT UP/NY, I show that the men did not just dissent from management by biomedical authority but found new authority about how to care for themselves as people with AIDS from their interactions with non-human microscopic life. The practices and writings of both men demonstrate that Foucault’s theory of counter-conduct exists in the history of AIDS as an interspecies process in which microscopic existents lead humans. From Katz and Greenberg, I argue there is an interspecies dimension to counter-conduct that exists as a frame for understanding people who find in non-human life a guide towards unconventional forms of care, revised forms of human behaviour and philosophies for persisting with illness. (shrink)

Though John Ruskin is remembered principally for his work as a theorist, art critic and historian of visual culture, he wrote exhaustively about his health in his correspondence and diaries. Ruskin was prone to recurring depressive and hypochondriacal feelings in his youth and adulthood. In 1871, at the age of 52 years, he developed an illness with relapsing psychiatric and neurological features. He had a series of attacks of brain disturbance, and a deterioration of his mental faculties affected his writing (...) for years before curtailing his career a decade before he died. Previous writers have suggested he had a psychiatric malady, perhaps schizophrenia or schizoaffective disorder. But the more obvious conclusion from a close medical reading of Ruskin’s descriptions of his illness is he had some sort of ‘organic’ brain illness. This paper aims to give insight into the relationship between Ruskin’s state of well-being and the features of his writing through a palaeographical study of his letters and diary entries. We examine the handwriting for physical traces of Ruskin’s major brain illness, guided by the historical narrative of the illness. We also examine Ruskin’s recording of his experiences for what they reveal about the failure of his health and its impact on his work. Ruskin’s handwriting does not have clear-cut pathological features before around 1885, though suggestions of subtle writing deficits were present as early as 1876. After 1887, Ruskin’s handwriting shows fixed pathological signs—tremor, disturbed letter formation and features that reflect a slow and laborious process of writing. These observations are more than could be explained by normal ageing, and suggest the presence of a neurological deficit affecting writing control. Our findings are consistent with conclusions that we drew from the historical record—that John Ruskin had an organic neurological disorder with cognitive, behavioural, psychiatric and motor effects. (shrink)

Supported decision-making has become popular among policymakers and mental health advocates as a means of reducing coercion in mental healthcare. Nevertheless, users of psychiatric services often seem equivocal about the value of supported decision-making initiatives. In this paper we explore why such initiatives might be rejected or ignored by the would-be beneficiaries, and we reflect on broader implications for care and coercion. We take a critical medical humanities approach, particularly through the lens of entanglement. We analyse the narratives of 29 (...) people diagnosed with mental illness, and 29 self-identified carers speaking of their experiences of an Australian mental healthcare system and of their views of supported decision-making. As a scaffolding for our critique we consider two supported decision-making instruments in the 2014 Victorian Mental Health Act: the advance statement and the nominated person. These instruments presuppose that patients and carers endorse a particular set of relationships between the agentic self and illness, as well as between patient, carer and the healthcare system. Our participant narratives instead conveyed ‘entangled’ relations, which we explore in three sections. In the first we show how ideas about fault and illness often coexisted, which corresponded with shifting views on the need for more versus less agency for patients. In the second section, we illustrate how family carers struggled to embody the supported decision-making ideal of the independent yet altruistic nominated person, and in the final section we suggest that both care and coercion were narrated as existing across informal/formal care divisions. We conclude by reflecting on how these dynamic relations complicate supported decision-making projects, and prompt a rethink of how care and coercion unfold in contemporary mental healthcare. (shrink)

Lifeworld-led care provides a route through which research and practice can navigate the ‘biopsychosocial’ allowing us to overcome the shortfalls of the medical model and enabling us to prioritise humanity in the care of people living with tinnitus. In this article, we sought to explore qualitative descriptions of life with tinnitus. We aimed to address the question ‘what it is like to live with tinnitus?’ In doing so we examined qualitative studies and provide suggestions about key themes that seem consistent. (...) This is a narrative, thematic overview of the way lifeworld has been conceptualised and explored in tinnitus research. (shrink)

This paper investigates the use of verbatim musical transcription as a research method in dementia care. It reports on an art-based ethnographic study ) in which verbatim transcription was applied to everyday interactions in dementia care, making use of musical—instead of verbal—notation. Starting from the notion that medical and healthcare settings can be sites of ‘found performance’, the paper reviews literature relating to artistic methodologies within medical humanities, music, ethnography and dementia care. From this review, it proposes a research design (...) and method of verbatim musical transcription as a potential avenue of investigating communication between carer and cared for in dementia care. The paper offers an illustrative example from Aeriel and draws conclusions from the synthesis of verbal and musical data analysis. Findings indicate an important advance in studies of dementia care communication towards a concept of the ‘post-verbal’ enabled by a musical research method and the clinical applications that it offers. (shrink)

This paper contributes to the evolving body of literature diagnosing the ‘business-like’ transformation of American medicine by historicising and recuperating the concepts of medical leadership and the corporation. In an analysis of the evolving uses of ‘leadership’ in medical literature, we argue that the term’s appeal derives from its ability to productively articulate the inevitable conflicts that arise between competing values in corporations, and so should be understood as a response to the neoliberal corporation’s false resolutions of conflict according to (...) the single value of profit. Drawing on mid-century theories of the corporation to reframe dominant social histories of medical corporatisation, we go on to argue that large medical institutions are productive sites for deliberation over the medical profession’s social contract. Our primary case study for this longer historical and broader theoretical argument is the MD Anderson Cancer Center, the world’s foremost treatment hospital for patients with cancer. We hold that the historical trajectory that led to MD Anderson’s exceptional but exemplary place in the evolution of American corporate medicine is reflective of historical trends in the practice. (shrink)

Modern medicine’s investment in the disembodied, objective ‘science’ of biomedicine, where patients are transformed from suffering subjects to objects of investigation, calls for heightened ethical awareness. Around the world, ethical codes of conduct emphasise beneficence and non-maleficence. Lately, we have also seen a quest for autonomy and equitable healthcare for diverse populations. However, these tenets alone do not effectively address the problems which regularly occur in transcultural consultations. By developing a ’space for reflection' based on selected writings of the moral (...) philosophers Axel Honneth, Emmanuel Levinas and Hans Jonas, my aim is to cast light on this issue. Given the differing aspects of the doctor-patient relationship, clearly there are no clear-cut rules to obey. However, a thematic analysis of a quote from a Somali, female refugee, supported by some other studies on medical practice, suggests that, metaphorically speaking, within the developed space for reflection, medical practice has worked itself into a corner. By neglecting the patient as a social being, lacking openness to alterity, and not conveying needed information, they make it very difficult for patients to take responsibility for their situation. In spite of doctors’ benevolence, the result is alienation, increased suffering and thus, potential harm. Similar tendencies are reflected in a number of recent studies on medical consultations. Therefore, rather than blaming the single doctor for moral deceit, we should see these tendencies as a ‘forgetfulness of recognition’ that affects the medical profession, a disturbance which source probably is hidden in doctors training. (shrink)

This article argues for the value of considering the interaction of literary/cultural studies, disability studies and engineering/design studies in the ongoing development of a critical medical humanities research frame. With a specific focus on prosthesis, but also considerations of embodiment, technology and augmentation as concepts in both cultural/disability theory and engineering/design, we note how the shifting and plastic ideas of ‘the prosthetic’ as used within cultural studies have never been in conversation with scholars who work on prostheses in engineering design (...) or the processes through which such technologies are produced. Additionally, we show that the increased use of systems engineering in the design and construction of prostheses creates fractured ideas of disabled bodies that frequently ignore both the cultural meaning and lived experience of technology use. In design and engineering, prostheses are literal objects, often made to order for a diverse range of clients and produced across different working platforms; in cultural studies, the word creates multiple resonances around both augmented bodies and non-embodied states increasingly understood in terms of assemblage and supplementarity. Working from this, we outline how questions of metaphor, materiality and systems weave through the different disciplines. The article claims that a critical dialogue between the working methods of literary/cultural studies and engineering/design, for all their obvious differences, possesses the potential to create informed and sophisticated accounts of disability embodiment. Our conclusion brings the strands of the enquiry together and points to the merits of engineering the imagination, and imagining engineering, as both a subject and method in future medical humanities research. (shrink)

This article examines how people who are shorter than average make sense of their lived experience of embodiment. It offers a sociophenomenological analysis of 10 semistructured interviews conducted in the Netherlands, focusing on if, how, and why height matters to them. It draws theoretically on phenomenological discussions of lived and objective space, intercorporeality and norms about bodies. The analysis shows that height as a lived phenomenon is active engagement in space, coshapes habituated ways of behaving and is shaped by gendered (...) norms and beliefs about height. Based on this analysis, the article challenges what we label as the ‘problem-oriented approach’ to discussions about growth hormone treatment for children with idiopathic short stature. In this approach, possible psychosocial disadvantages or problems of short stature and quantifiable height become central to the ethical evaluation of growth hormone treatment at the expense of first-hand lived experiences of short stature and height as a lived phenomenon. Based on our sociophenomenological analysis, this paper argues that the rationale for giving growth hormone treatment should combine medical and psychological assessments with investigations of lived experiences of the child. Such an approach would allow considerations not only of possible risks or disadvantages of short stature but also of the actual ways in which the child makes sense of her or his height. (shrink)

Our modern-day frenetic healthcare culture has progressed to a state where healthcare professionals tend to detach themselves from the emotions of their patients/clients, rather than embed compassion into their daily practice. The AMS Phoenix Project: A Call to Caring was implemented with the goal to instil and sustain empathy and compassion in environments where clinicians learn and work. The purpose of this study is to report on how an interprofessional community of practice of healthcare educators can contribute to a cultural (...) shift in promoting and delivering compassion in healthcare through health professionals education. Using an imaginative creative autoethnography that adopts a narrative design through graphic illustrations, data were collected from 25 members of the Phoenix@Queen’s CoP during a 1-day retreat. Data collection included a graphic recorder who visually depicted all retreat dialogue, field notes that highlighted emergent themes and artefacts produced during the day. Audio recordings of the discussions were used as secondary sources of data. Using thematic analysis, three themes emerged: the call to caring is a long and winding road with many barriers and rewards; CoP members experienced personal growth in and through the community; and the Phoenix@Queen’s CoP matters in terms of professional relationships, leadership and moving forward a shared agenda about practising compassionate healthcare. This study describes the development of a CoP that moves away from traditional committees and discussions to an experiential creation of connections and shared meaning by its members. By using autoethnography, and by demonstrating how graphic illustration can be an innovative and creative method for recording and interpreting group discussions, we have demonstrated the accelerated development of an authentic CoP. With a richer and more authentic community, the shared goals of healthcare professional educators are more likely to be achieved. (shrink)

The following paper examines the cyberpunk transhumanist graphic novel Transmetropolitan through the theoretical lens of disability studies to demonstrate how science fiction, and in particular this series, illustrate and can influence how we think about disability, impairment and difference. While Transmetropolitan is most often read as a scathing political and social satire about abuse of power and the danger of political apathy, the comic series also provides readers with representations of impairment and the source of disability as understood by the (...) Social Model of Disability. Focusing on the setting and fictional world in which Transmetropolitan takes place, as well as key events and illustration styling, this paper demonstrates that the narrative in this work encompasses many of the same theoretical underpinnings and criticisms of society’s ignorance of the cause of disability as the SMD does. This paper aims, by demonstrating how Transmetropolitan can be read as an allegory for the disabling potential of society as experienced by individuals with impairments, to prompt readers into thinking more creatively about how narratives, seemingly unconcerned with disability, are informed and can be understood via disability theory. (shrink)

The existing literature on leadership often describes it within fairly rigid gender roles. Entire models of leadership have been ascribed gendered labels. Shared leadership is, in traditional leadership theory, a feminine model. After observing a National Health Service department enacting a shared leadership model, and using ethnography, grounded theory and comics-based research, we decided to explore the relationship between shared leadership and gender stereotypes. We realised our hope was to see a subversion of traditional stereotypes. Our data showed shared leadership (...) overall as a feminine model, with its focus on distribution and compassion. Within the group, a range of gender roles were performed, meaning that the group could represent itself to the outside world as either more masculine or more feminine as required. This was beneficial, as conflict with outsiders was minimised and hence anxiety reduced. However, we noted that within the group, traditional gender roles were not subverted and were probably reinforced. Despite our view that shared leadership has not been an opportunity to resist gender stereotyping within this department, the success of this feminine model may represent a challenge to the prevailing masculine model of leadership within the NHS. (shrink)

Literature can offer a wealth of information about epilepsy: from complex narratives to children’s picture books, it can help broaden people’s understanding, show what it is like to live with epilepsy and provide a medium to which people with epilepsy can relate. The latter being particularly important in such cases where seizure experiences are highly subjective, such as those associated with ‘focal seizures’, a common seizure type, which are known for their variable and hard-to-describe symptoms, causing complications with diagnosis as (...) many of the symptoms overlap with those of other psychological health conditions.Literature, however, has more to offer than acting as a source for demystifying epilepsy. On a disciplinary level, literature is surrounded by different frameworks for linguistic analysis which, importantly, are also applicable to real-life discourse. In particular, the well-established discipline, cognitive stylistics, provides ample theory for analysing the different facets of literature, from narratological and storyworld level, to the intricacies of characterisation revealing the structure behind the presentation of fictional characters’ experiences, attitudes and personalities. Such methods have the potential to transform and decode complex, subjective experiences into manageable pieces of information. This, then, holds great potential for shedding light on the experiences of real-life seizure narratives to the extent that the identified seizure’s linguistic ‘profiles’ can be used to aid real-life situations. Therefore, the present study calls to attention the potential evoked through the convergence between literature, linguistic analysis, fictional characters, PWE and seizure narratives. Extrapolating the qualities of these converging strands can enrich our understanding of the seizure experience, as well as bring to awareness the areas of risk that surround aspects of the diagnosis process. (shrink)

One leitmotif that medical humanities shares with phenomenology and most contemporary medical ethics is emphasising the importance of appreciating the patient as a whole person and not merely as an object. With this also comes a focus on marginalisation and invisibility. However, it is not entirely clear what exactly patient-centred care means. What both phenomenology and medical humanities contribute to a ‘more humane health-care encounter’ is offering not only a first-person perspective, but a dialogue between the third-person perspective and evidence-based (...) medicine. Therefore, one main aim of medical humanities and phenomenology is to pay attention to the lived body while adding this to the science of the objective body. In this study, I will discuss this connection through the lens of Hermann Schmitz’s phenomenology. Finally, in light of this dialogue between phenomenology and medical humanities some proposals for medical practice shall be suggested. (shrink)

During the interwar years, health exhibitions and pavilions were commonplace in Europe and the USA. Within these exhibitions were a small number of life-sized or oversized mechanical men used to represent physiological processes. Although they received significant press attention at the time, little academic analysis exists to date. These mechanical men, I argue, all provide important insights regarding the way design could be used to heighten the appeal of physiology and crucially, in the formation of a new term—the Accessible Body.First, (...) this study re-introduces three mechanical men of health to an academic audience, identifying provenance and unearthing key details of their performance and visual appearance. I argue that there is much to be gained by their analysis in comparison to the more notorious body representations that they orbited. Through detailed analysis of their forms, the three mechanical men are shown to challenge the dominant notions of the Ideal Body and Fordist Body embodied in the Dresden Transparent Man and ‘Der Mensch als Industriepalast’, respectively. The study examines and classifies these mechanical men as a new type of body— the Accessible Body. This term refers to representations that embody a sense of consciousness, the re-appropriation of popular culture and engagement with humour and visual appeal.The study concludes with discussion about the Accessible Body in contemporary health education. What tropes and approaches may remain significant today? By leaning on contemporary thinking about linguistic rather than visual metaphors in health, this study concludes with provocations for the alignment of other appropriate metaphors within a mechanical man and Accessible Body framework. Ultimately, I call for a reshifting of man/machine visual metaphors as a means of re-engaging the audience today. (shrink)

The metaphorical concepts resilience and post-traumatic growth reflect the contemporary Western understanding of overcoming highly challenging life events. However, it is known that across different cultures, a broad range of metaphorical idioms for describing adaptive responses to severe adversity exists. This study aimed to explore and contrast two distinct cultural groups’ culturally shared metaphors for overcoming severe adversities. Fieldwork was conducted in two rural communities: an indigenous Brazilian community that has experienced severe collective adversity and a mountain village in Switzerland (...) that has survived a natural disaster. We carried out separate qualitative metaphor analyses of semistructured interview data from each community. There were some similarities in the metaphorical narratives of the two cultural groups, for example, in metaphors of balance, changed perspective, collective cohesion and life as a journey. The main variations were found in metaphors of magical thinking, equilibrium and organic transformation used by the Brazilian group and metaphors of work, order and material transformation used by the Swiss group. Results from this study suggest that the Western-devised concepts of resilience and PTG can be further expanded, which is highlighted by the variety of culturally shared metaphors. Metaphorical idioms for overcoming severe adversity may be determined by the type of trauma as well as by the sociocultural and historical context. Our findings indicate potential approaches to the cultural adaptation of psychological interventions. (shrink)

In this introductory essay, we will present a translational medical humanities approach where the humanities are not only an auxiliary to medical science and practice, but also an interdisciplinary space where both medicine and the humanities mutually challenge and inform each other. First, we explore how medicine’s attempt to tackle the nature–culture divide is emblematically expressed in the concept and practice of knowledge translation. Second, we compare and contrast KT as an epistemic ideology and a socio-medical practice, with concepts and (...) practices of translation developed in the human sciences. In particular, we emphasise Derrida’s understanding of translation as inherent in all meaning making, as a fundamentally textual process and as a process necessarily creating difference rather than semantic equivalence. Finally, we analyse a case from clinical medicine showing how a more refined notion of translation can enlighten the interaction between biomedical and cultural factors. Such a translational medical humanities approach also requires a rethinking of the concept of evidence in medicine. (shrink)

This article analyses how World War II shifted and contained embodied experiences of waiting in relation to broader ideas of lived time in modernity. The trench warfare of World War I has often been imagined as a limit experience of anxious waiting, but World War II produced compelling accounts of experiences of suspended time in civilian populations exposed to the threat and anticipation of ‘total war’. This article analyses representations of this suspended present drawn from Elizabeth Bowen and Virginia Woolf, (...) alongside materials in the Mass Observation Archive, to develop an account of how exposure to a future shaped by the potential of annihilation from the air reshaped experiences of durational temporality and the timescapes of modernity in the London Blitz. It also explores the relationship between anxiety, waiting, and care by attending to psychoanalytic theories that developed in the wartime work of Wilfred Bion and Melanie Klein. Extending Freud’s account of anxiety as producing ‘yet time’, this article describes how and why both literary and psychoanalytic texts came to understand waiting and thinking with others as creating the conditions for taking care of the future. (shrink)

In 1913, eccentric French composer Erik Satie wrote a fragmentary, diary-like essay where he depicted a strikingly rigid diet consisting solely of white foods: eggs, sugar, coconuts, rice, cream cheese, fuchsia juice and so on. Satie’s brief essay has later been used as one of many puzzle pieces in attempts to retrospectively diagnose him with autism spectrum disorder. With Satie’s white meal as a starting point, this paper explores colour-based food preferences and selective eating in clinical and non-clinical populations, with (...) a special focus on autism spectrum disorder and avoidant/restrictive food intake disorder. General colour preferences and their causes as well as the impact of colour on taste and food identification are also explored. Selective eating during childhood is immensely common and does not generally lead to disordered eating in the long run, although subgroups may experience rigidity around food of a more enduring nature. Problems related to eating were repeatedly described in Kanner’s original 1943 autism case series and continue to be common in autism. Most studies on eating and sensory sensitivity in autism show that the texture and consistency of the food are the most common factors behind selective eating. In contrast, colour-based food preferences appear to be relatively rare, although numerous anecdotal reports exist. Foods that are white or colourless may be particularly appealing or tolerable for individuals with sensory hypersensitivity, which can occur in autism or ARFID. Ultimately, in the case of Erik Satie, this paper concludes that his description of a strictly white diet should not be read as an autobiographical account but rather as an ironic take on contemporary symbolist literature, with the famously decadent all-black dinner party in French novelist Joris-Karl Huysmans’ À Rebours as an obvious source of inspiration. (shrink)

BackgroundPreconception Expanded Carrier Screening is a genetic test offered to a general population or to couples who have no known risk of recessive and X-linked genetic diseases and are interested in becoming parents. A test may screen for carrier status of several autosomal recessive diseases at one go. Such a program has been piloted in the Netherlands and may become a reality in more European countries in the future. The ethical rationale for such tests is that they enhance reproductive autonomy. (...) The dominant conception of autonomy is individual-based. However, at the clinic, people deciding on preconception ECS will be counselled together and are expected to make a joint decision, as a couple. The aim of the present study was to develop an understanding of autonomous decisions made by couples in the context of reproductive technologies in general and of preconception ECS in particular. Further, to shed light on what occurs in reproductive clinics and suggest concrete implications for healthcare professionals.Main textBased on the shift in emphasis from individual autonomy to relational autonomy, a notion of couple autonomy was suggested and some features of this concept were outlined. First, that both partners are individually autonomous and that the decision is reached through a communicative process. In this process each partner should feel free to express his or her concerns and preferences, so no one partner dominates the discussion. Further, there should be adequate time for the couple to negotiate possible differences and conclude that the decision is right for them. The final decision should be reached through consensus of both partners without coercion, manipulation or miscommunication. Through concrete examples, the suggested notion of couple autonomy was applied to diverse clinical situations.ConclusionsA notion of couple autonomy can be fruitful for healthcare professionals by structuring their attention to and support of a couple who is required to make an autonomous joint decision concerning preconception ECS. A normative implication for healthcare staff is to allow the necessary time for decision-making and to promote a dialogue that can increase the power of the weaker part in a relationship. (shrink)

This article asks what the reasons are for the frequent linking of the image of the Holocaust with that of dementia in contemporary discursive and representational practice. In doing so, it analyses some of the numerous 21st-century examples of fiction, drama and film in which the figure of a Holocaust survivor living with dementia takes centre stage. It explores the contradictory cultural effects that arise from making such a connection, in contexts that include expressions of fear at the spectacle of (...) dementia, as well as comparisons between the person living with that condition and the inmate of a concentration camp. Detailed consideration of novels by Jillian Cantor and Harriet Scott Chessman as well as a play by Michel Wallenstein and a film by Josh Appignanesi suggests that the fictions of this kind can appear to provide solace for the impending loss of the eyewitness generation, yet also offer potential for a model for caregiving practice to those living with dementia in broader terms. (shrink)

In the 2010s, a small number of science fiction films and television series exploring the theme of the robot carer and how humans respond to them were released. This paper explores three works in this regard: the films Robot & Frank, Big Hero 6 and the television series Humans. Examining these works with some of the ethical issues currently being discussed in the use of robot technology in care work, this paper demonstrates how they align themselves with, but also challenge (...) some of these ideas, and ultimately direct viewers to consider their own expectations of personalised healthcare. The essay begins by examining the fears of the care industry deploying robots to replace the work of human carers, followed by a discussion of the effectiveness of robots as carers as depicted in these fictional representations, and the final section considers the social environment that these robot carers are situated in, and how the robots become a reflection of human lives and a repository of memories of affective relations. These texts suggest alternate ways of thinking about human–robot interactions and care work, advocating for a more mutually dependent and reciprocal working relationship that might lead to a better quality of care. (shrink)

BackgroundTraditionally, palliative care has focused on patients suffering from life-threatening somatic diseases such as cancer or progressive neurological disorders. In contrast, despite the often chronic, severely disabling, and potentially life-threatening nature of psychiatric disorders, there are neither palliative care units nor clinical guidelines on palliative measures for patients in psychiatry.Main textThis paper contributes to the growing literature on a palliative approach in psychiatry and is based on the assumption that a change of perspective from a curative to a palliative approach (...) could help promote patient-centeredness and increase quality of life for severely ill patients in psychiatry as well as in somatic medicine. To exemplify this, we offer three different clinical scenarios: severe and enduring anorexia nervosa, treatment-refractory schizophrenia, and chronic suicidality and persistent self-injury in borderline personality disorder.ConclusionWe emphasize that many typical interventions for treatment-refractory psychiatric disorders may indeed be of a palliative nature. Furthermore, introducing traditional features of palliative care, e.g. so-called goals of care conversations, could aid even further in ensuring that caregivers, patients, and families agree on which treatment goals are to be prioritized in order to optimize quality of life in spite of severe, persistent mental disorder. (shrink)

BackgroundKnowing the opinions of patients with Progressive Neurological Diseases and their family members on end-of-life care can help initiate communication and the drawing up of a care plan. The aim of this paper is to describe the creation and psychometric properties of the newly developed APND-EoLC questionnaire.MethodsFollowing focus group discussion, four main areas of interest were identified: patients’ and family members’ attitudes towards end-of-life care, factors influencing decisions about treatment to prolong patients’ life, concerns and fears regarding dying, and opinions (...) on the system of care. The created questions were divided into domains based on factor analysis and psychometric properties were evaluated by sample of 209 patients with PND and 118 their family members.ResultsThe final version of the scale contains a total of 28 questions divided into six domains and five individual questions determining views of the care system with specified response options. Construct validity was verified by confirmatory factor analysis for each evaluated area individually. Appropriate psychometric properties were identified in the questionnaire.ConclusionsThe APND-EoLC questionnaire can be recommended for use in both research and clinical practice. (shrink)

BackgroundProtecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of privacy as well as the situations in the research setting that require privacy protections. The aim of this study was to explore the views of research professionals from Arab countries regarding concepts and scope of privacy that occur in clinical research.MethodsWe adopted an exploratory qualitative approach by the use of focus group (...) discussions. We recruited individuals involved in research from Egypt and Morocco. We analyzed focus group data via a constant comparison approach, which consisted of close reading of the transcribed interviews followed by coding and then determining themes and subthemes.ResultsBetween August 2016 and July 2018, we conducted nine focus group discussions. Respondents discussed several privacy issues that occurred before the research began ; during research, and after the research. Respondents revealed their perspectives of patients towards privacy in the clinical and research settings and mentioned that patients are more likely to permit access to their privacy in the clinical setting compared with research setting due to the existence of benefits and trust in clinical care. Respondents also recommended training regarding data protections for individuals involved in research.ConclusionsOur study shows that research professionals discussed a range of privacy issues that are present during the different stages of research. We recommend 1) development of standards regarding privacy protections during recruitment efforts; 2) additional training for individuals involved in research regarding best practices with data security in secondary research; 3) a quantitative study involving investigators and REC members to determine their knowledge, attitudes and practices regarding privacy issues that occur in research; and 4) a quantitative study involving patients to elicit their views regarding their privacy concerns in research. (shrink)

BackgroundThere is continued need for enhanced medical ethics education across the United States. In an effort to guide medical ethics education reform, we report the first interprofessional survey of a cohort of graduate medical, nursing and allied health professional students that examined perceived student need for more formalized medical ethics education and assessed preferences for teaching methods in a graduate level medical ethics curriculum.MethodsIn January 2018, following the successful implementation of a peer-led, grassroots medical ethics curriculum, student leaders under faculty (...) guidance conducted a cross-sectional survey with 562 of 1357 responses received among students enrolled in the School of Medicine, College of Nursing, Doctor of Physical Therapy and BS/ MD Professional Scholars programs at The Medical College of Georgia at Augusta University. An in person or web-based questionnaire was designed to measure perceived need for a more in-depth medical ethics curriculum.ResultsThe majority of respondents were female, white and mid-20s in age. Almost half of respondents reported no prior medical ethics exposure or training in their previous educational experience, while 60% of students across all degree programs reported an interest in more medical ethics education and 92% noted that an understanding of medical ethics was important to their future career. Over a quarter of students were interested in pursuing graduate-level training in medical ethics, with case-based discussions, small group peer settings and ethics guest lectures being the most desired teaching methods.ConclusionsThe future physician, nursing and physical therapist workforce in our medical community demonstrated an unmet need and strong interest for more formal medical ethics education within their current coursework. Grassroots student-driven curricular development and leadership in medical ethics can positively impact medical education. Subsequent integration of interprofessional training in medical ethics may serve as a vital curricular approach to improving the training of ethically competent healthcare professionals and overcoming the current hierarchical clinical silos. (shrink)